Hold on to your power: don't let others squash it. Hold on to your courage: don't let others preach it out of you. Hold on to your independence: don't let others scare it out of you. Author your life without guilt or shame: do not live to please others. Refuse to surrender except to your truest self and your wisest voice.- Patricia Lynn Reilly

The greater your dreams, the more terrible your nightmares.~Edward Abbey

It was wonderful to see my Mom for a little while last weekend. It's been a really long time, and after all of her latest heart problems and procedures it was important to see that she was okay in person. Intelletually I knew she was doing very well and had recieved the best of care, but sometimes it's important to see things in person, to touch them, to really *know* that things are okay.

She brought up an interesting point which needs to be addressed - now that she has the pacemaker (which has addressed her heart problems wonderfully, lessened the burden of worry considerably, and enabled her to get back to the things she likes to do) she's in the position of not being able to have her heart stop normally. She's worried that the device won't let her die. In effect, she's already 'on machines' to an extent. What to do about this when it *is* time for her to pass?

My initial mental response was 'ohpleaseIdon'twanttotalkaboutthisrightnow', but my response to her was she would have to update her living will and commit whatever she wanted to paper. She also needs to do a bit of research into how having a pacemaker affects a DNR order. I also suggested that she speak with other people about this and try to get a feel for the whole of the situation.

I, however, still bear some responsibility in this situation. So how do I redefine the 'I will not let them put you on machines' promise in light of the pacemaker, which will do it's electronic damndest to keep her heart beating? What will I have to do, short of having the thing removed' to ensure she can die a peaceful death when the time comes?

When my father died in March... boy. Hard to know where to start. He strongly felt that he did not want to be artificially kept alive. And then, in early 2002, he was diagnosed with this heinous bone marrow cancer type deal. Initially, while he could still produce blood of his own, he would get transfusions every couple of months. As the disease progressed, that time frame shortened. Many different treatments were tried, and late last year/early this year, he and my mother decided that he'd try for a stem cell transplant, a process that required extensive chemo, then a protracted recovery period.

Then, just about the same time that he'd been proclaimed to be a fabulous candidate for a transplant, with a high likelihood of survival, some dude ran a red light at like 50 mph and plowed into the passenger side of the Volvo, where my dad was sitting. He got 6 broken ribs and a cracked sternum, and went into the hospital where he stayed for more than a month, emerging on his birthday for what turned out to be only a couple of days. I was out for a visit the weekend before he was supposed to go to Seattle for a transplant, and we ended up having to take him back to the hospital on his doctor's orders, to receive transfusions over the course of the weekend.

He worsened, over that weekend, as is not surprising -- hospitals are hardly a setting conducive to "not feeling poorly." Come Monday, it was determined he was too transfusion-dependent to make the flight cross-country. For 3 more weeks, he stayed in that hospital, with everyone hoping that he could be stabilized enough to make it out for the transplant. Then on March 8, he decided he no longer wanted to hold out for that possibility, and instead, to go ahead and put into play his contingency plan, to simply die. "My body is shutting down," he told me. "I was a farmer, I've been around animals enough to know what's happening here."

I rushed to his side, taking my sister and niece, with my poor husband lingering to take care of some stuff and figure out if he and our son could make it there too. I had talked with Ed (my father) a lot about his wishes, if it came to him dying, then and there. It was the night of the 9th when I arrived, and spent the night. The next day, we tried to get arrangements made to get him moved to a hospice facility as he wanted -- and he was deteriorating such that he could no longer reliably be talking -- but it turned out that couldn't happen till the 11th.

The single hardest thing about it all was making the mental transition from "keep him alive to make it for the transplant" mode, to "let him die" mode. When it all came down to it... I had to hold the line, a little, with everybody else, even my poor mother, who had been holding fast to everything for 2 years. He was transported in an ambulance to the hospice some 8 miles away, and I drove his car behind the ambulance, filled with family. He breathed his last as they were removing the stretcher from the ambulance.

I'll never forget taking his hand, looking at him there, not breathing, head turned to the side, eyes open but unseeing, feeling a pulse in his hand and seeing it in a vein in his temple. My sister saw it too. "He's got a pulse! Maybe they can do something!" she cried. "No," I said, reiterating what my mother had said moments prior, "He has a DNR. We have to let him go."

More than anything... the technicalities aside... what you have to do is be prepared to be that person, to say that sort of thing, and to watch the last blush of life fade from a person who gave life to you in the first place, a person your world has never been without. If you can face that, if you can do that, then the technical stuff can be made to fall in line.

Doctors, and hospitals, that know the patient's wishes in such matters, and who don't oppose them, are also important. And... hospice. I can't say enough in favour of hospice.

It's not the dying itself that is a problem for me. I have no problem with that and went through this when my day died little over 10 years ago. The question becomes what do I have to say, what do I have to ensure is in place, who will turn off her pacemaker so she can die in peace instead of being failing and in pain and having the damned thing shock her heart and keep it going mechanically - in effect preventing her from dying.

When my Dad was so ill (for years) I promised him that I would not let them put him on machines (as he had promised me so many years before when I got kicked in the head and was dead several times for varying durations up to 5 minutes or so), and at one point during the whole ordeal as a young woman (who looked at least 10 years younger than I was at the time, which didn't help) I stood in the doorway of my father's hospital room (at the Catholic hospital, no less, so you know what they thought their priority was) and literally screamed at the doctors and nurses and wouldn't let them in the room to put him on machines. And I had the papers in hand as well. So in that instance I could *physically* do something.

But I can't do the same thing for Mom, short of ripping the thing out of her chest, hmmm? Makes the whole thing more difficult. I have no problem fighting to get her pacemaker turned off so she *can* die in peace if it's the time, but who do I fight with and how do I do it? Doctors will keep trying as long as there's a heartbeat and now she has the device to ensure she has the heartbeat - it will keep pacing and zapping no matter what.

-the redhead-

PS - what's your address - I will send Plums and Baby Plums as today is a Post Awful Day

Yeah, I dunno. It is hard stuff to talk about and all that sort of thing and so I have no way of really feeling out if I'm even saying anything that halfway makes sense. To see if I can distill out anything potentially of value or use, hrmm. I think the biggest helpful factors for us were (also in a Catholic hospital incidentally):

- he had, and we had, discussed what he wanted to do if it came to dying, with lots of the hospital staff, chaplain type people, etc. - hospice, and arrangements to transfer to hospice if it came to that, because in hospice, they have a different set of priorities and can do different stuff, that they can't in a hospital setting. So perhaps if there is hospice in your/her area, they might have advice or have dealt with somewhat similar scenarios.

Sending address in email. What am I supposed to be sending you in return, again?

It's very hard to know what artificial and extreme measures mean. I mean, it could be argued that multiple-times-daily transfusions, and being tethered to an IV and not allowed out of bed, are extreme and "on machines," or being given oxygen, or... all kinds of things. The tough part is determining where the core of it all is... the intent, the kernel of whatever it is, behind "don't let them put me on machines."

My father's life could easily have been prolonged for days, or weeks, beyond what it was. Maybe more, I don't know. He was in the most godawful pain, at the end. Though he could barely speak at all on that final day, he would take off his oxygen mask and say, "Quickly!" and what he meant was... get him out of the hospital, where he didn't want to die, and let it be over... quickly.

What I'm trying to get at is... extreme measures were used, for 2 years, to prolong my father's life. For much of that 2 years, he had a pretty good quality of life and hope of improvement and much longer life. Then, things shifted from that sort of mindset to a "let him die the death he wants" mindset. This is hard to explain -- but... medical intervention, even if a machine, that an individual can choose for him or herself, and which promises or hopes for a good quality of life for longer, is one thing -- while intervention that prolongs pain and just delays a foregone conclusion, is another.

The hardest thing for me personally was knowing where the line was, and when it was crossed... *even though* my father was explicitly able to state his opinion on the subject. Making my gut fall in line with it was far, far harder than any of the relatively abstract questions, or the concrete technical ones.